We conducted a prestigious ‘Cochrane’ systematic review – carefully bringing together all of the existing evidence – about the effects of providing information to people after stroke.
We found that providing information actively may:
A stroke is a sudden loss of brain function caused by lack of blood supply. Stroke can lead to death or physical and mental problems. It can have a major effect on the person’s life and those around them.
Stroke survivors and their carers often say they have not been given enough facts about stroke. They often do not feel ready for life after leaving hospital. Some people say they were overwhelmed. The information was not explained to them or was given at the wrong time. Information may help people to manage their health better and adjust to life after stroke.
We wanted to know whether it was better or worse to be given extra information for stroke survivors and their carers. We also wanted to know if the way information was provided matters, and assess the effects of active or passive information provision.
We reviewed the evidence about the effects of providing information to people after stroke. These were people who have had a stroke or mini‐stroke (transient ischaemic attack (TIA)), or their carers, such as friends and family. We mainly looked at the effect on their knowledge of stroke and stroke care, their mood and their quality of life.
We found 33 studies involving 5255 stroke survivors and 3134 carers. In 11 studies, information was provided passively as a leaflet, DVD, medical history or personalised booklet. In 22 studies, information was provided actively, often combining ways such as talks, demonstrations, meetings and phone calls.
For stroke survivors, providing information actively may improve knowledge of stroke and stroke care. It may slightly reduce anxiety and depression, but this may not be noticeable. It may also improve quality of life. The evidence was less clear for providing information passively. However, it may slightly worsen anxiety and depression. Again, this may not be by a noticeable amount. For carers the evidence is very uncertain or absent.
We generally have little confidence in the evidence. We are moderately confident that the depressive symptoms of stroke survivors were slightly reduced by active information provision. Our confidence was often limited because:
Adding active information provision to usual care may slightly improve some important stroke‐survivor outcomes, but effects are generally very uncertain for carers, or in the case of passive information provision. Actively providing information may improve knowledge of stroke and stroke services, increase some aspects of stroke‐survivor satisfaction, slightly reduce cases and symptoms of anxiety and depression in stroke survivors, and improve quality of life. Providing information passively may have a slightly negative effect on survivor anxiety and depression. The effects of providing information on other stroke‐survivor and carer outcomes is generally uncertain. Although the best way to provide information is still not clear, the results of this review suggest that strategies that actively involve stroke survivors and carers and include planned follow‐up for clarification and reinforcement should be used in routine practice, and favoured over passive approaches.
Future work should focus on the further development of a generalisable intervention which could be robustly evaluated in a large multicentre study. The evaluation of interventions is currently limited by the lack of a widely recognised measure of stroke‐related knowledge. Attention should be given to the design, development and evaluation of a stroke‐related knowledge questionnaire. Further consideration should be given to the most appropriate outcome domains for this type of intervention, in particular whether they reflect the expectations and aspirations of stroke survivors and their carers. Information provision for people with aphasia and cognitive impairment also requires further attention.
Investigators:
Anne Forster, Tom Crocker, Lesley Brown, Natalie Lam, Faye Wray, Peter Knapp.
Collaborators:
University of Leeds, Bradford Teaching Hospitals NHS Foundation Trust, Hull York Medical School.
Crocker TF, Brown L, Lam N, Wray F, Knapp P, Forster A. Information provision for stroke survivors and their carers. Cochrane Database of Systematic Reviews 2021;11:CD001919. https://doi.org/10.1002/14651858.CD001919.pub4
Crocker TF, Brown L, Lam N, Wray F, Knapp P, Forster A. Information provision for stroke survivors and their carers: Cochrane review. Stroke 2022;53:e269-e270. Invited Cochrane Corner article. https://doi.org/10.1161/STROKEAHA.121.038162
Crocker TF, Brown L. Providing information to stroke survivors and their carers. Cochrane podcast. Providing information to stroke survivors and their carers | Cochrane
We searched for studies in May and June 2019 and searched one source again in September 2020. The studies were published between 1987 and 2019.
Northern and Yorkshire National Health Service (NHS) Executive Research and Development Directorate funded the original review.
This update presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (Grant Reference Numbers RP‐PG‐0606‐1128 and RP‐PG‐0611‐20010). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.
For further information contact:
Tom Crocker (tom.crocker@bthft.nhs.uk), Anne Forster (a.forster@leeds.ac.uk)
